Friday, January 3, 2014

Wolf Hirschhorn Syndrome: Two Years Later

Late in the summer of 2008 I was enjoying life as a newlywed with very little responsibility. Funny how the months following your wedding are similar to the months following graduation from college -- pressure of planning has been lifted, cocktailing often, and no immediate expectations from anyone.

During that time I had the pleasure of attending my company’s management off-site (super fun) which included team-building, lots of sharing, and an “expert” motivational speaker telling us we should “strive to do what we truly want to do in life.” Let me tell ya, in a dark ballroom in the basement of The American Club in Kohler, WI no one was doing what he or she truly wanted to do in life.

However, we all played along and participated in the activity Mr. Expert explained would “help us become better managers and media experts and humans  . . . or something like that. While I mock, I can still clearly remember one super lame activity five years later.

Mr. Expert had everyone write his or her life story in 7 words. “Where do you want to go? What do you want to be? What do you expect of your future?” Yep, everyone groaned and whined about how that was impossible and silly and what does this have to do with media? But we took a few minutes and came up with our seven-word life story.

Next, Mr. Expert asked a few of us to share with the group. Here are a few:

“I should have been a writer instead”
“This job needs to pay more money”
“Three years I won’t be in media”

Sensing a theme here?

Finally, my former manager and friend, Rebecca, who was sitting across the room, raised her hand to offer her seven-word life story:

“Exactly where I thought I would be”

“What?!?!” I shouted. “No way, those are my exact words as well.”

Mr. Expert glared at me and said, “Let me see your paper. Never in all my years have I ever seen two exact same seven-word life story.”

He was actually mad but we thought it was perfect. Rebecca and I are . . let’s just say very detail-orientated (I am sure some of the team that worked for us might have some other words). We worked well together, had the same work ethic, and both LOVED the movie Girls Just Want to Have Fun.  

Post off-site, Rebecca and I joked about our seven-word life story often. I came back to those words frequently (maybe off-site, team building exercises are not totally worthless). I truly was exactly where I thought I would be -- happily married to my best friend, taking advantage of the fabulous city, working at my dream company from college, and enjoying life. Don’t get me wrong everyday was not roses, but for the most part life made me smile.

Fast-forward to December 20, 2011 . . . my 32nd birthday and the night before our amniocentesis. Facebook overflowed with birthday wishes from friendly faces who had no idea we were not smiling. Each one was sweet and heartfelt but it was Rebecca’s that stuck “Happy Bday Jen! I hope you still feel your 7 words are true.”

I cried as I read the line over and over and over. I so badly wanted to say “No, I’m lost. I never thought I’d be here anticipating an amnio during my birthday dinner. This is not where I wanted to be. This was not my vision from the summer of 2008.” I spent much of the holidays crying wondering if I would ever find my way back.

By January 3, 2012, after hanging up the phone with the geneticist, I no longer had words for my seven-word life story. Nothing. It was blank.

I never imagined I would spend 5 hours a week watching therapists teach my son to sit, to hold his head up, and to play with toys. I never imagined I would spend 3 hours a week shopping for, making, and cleaning up blenderized food to feed through a tube that goes into my son’s stomach. I never imagined I would know the words Wolf or Hirschhorn. I never imagined I would spend close to 200 days (if you add up all the hours with over-night stays and doctor’s visits) in a children’s hospital in the first two years of my son’s life. I never imagined shooting up in the middle of the night hoping and praying my son would take a breath after a rough coughing fit. I never imagined wondering if my son will ever see 2 . . .5 . . . 10 birthday candles on a cake.

And yet . . .

I never imagined the joy of watching our 21-month old son roll over after 5 minutes of trying very hard. I never imagined I would tear up as my 3-year old holds his brother’s hand teaching him how to push his favorite John Deere tracker. I never imagined friends from long ago reaching out to learn more about our son. I never imagined getting long, strong hugs from close friends and strangers after meeting my son. I never imagined having a whole new group of friends who have little buddies similar to our son. I never imagined how much love and strength a chromosome deletion could bring to a marriage and family.

Today, on January 3, 2014, two years after hearing “We got your results back and we found a chromosome abnormality. There is a small deletion on the short arm of chromosome 4. This has been classified as a very, very rare syndrome known as Wolf-Hirschhorn Syndrome” I have my words back.

“Kinda where I thought I would be”
“Exactly where I should be right now”

My seven-word life story has slightly shifted but I’m still the happy newlywed from 5½ years ago and I sure have far more love and smiles in my life than I ever imagined.

Cookie decorating Day
Cookie Decorating Day

Waiting for Santa
Holiday Sing-a-Long at School

Matching PJs are the best

Brothers in bowties on Christmas Eve

Connor asked for a harmonica and bongos - JD asked for a rocking horse . . . Santa delivered

Christmas Morning besties

Our gift!